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Old 09-08-2007, 12:21 PM   #1
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Almost 5 mths post-op, feeling hopeless.

I had a level 1 fusion on 4.26.2007 (L5/S1) but I was originally diagnosed as having 3 herniated discs - L1, L3, L5. My surgeon decided to be conservative and only fixed the disc causing the most damaged. I am almost 5 mths post-op and still in severe pain, still not able to do everyday things again and now my surgeon is cutting me loose b/c he's already gotten all my money. He is now sending me to a PM doctor. He says that I shouldn't still need pain meds this many mths post-op. Well, guess what doc? I'm still in severe pain. I'm feeling so hopeless about the whole situation. What a joke these medical professionals are. I'm only 29 yrs old and began having back problems after the birth of my 1st child. I would like more children and I would like to be able to take care of them too. I'm beginning to think that I'll never get better. This is a life sentence that I didn't sign up for. Sorry to be so depressing but these doctors are just giving us all the run around. I just want to be normal again.

 
Old 09-08-2007, 06:23 PM   #2
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Re: Almost 5 mths post-op, feeling hopeless.

Wow, Sam, I'm so sorry to hear this!

Will the PM doc do additional testing, maybe a new MRI, etc, to pinpoint the cause of your pain? Maybe he'll be able to send some new information to your doctor so he'll take you seriously. I sure hope so. You've been through all this and to still have such pain is just horrible. I hope the PM can help you!

Take it a step at a time, but don't give up! Just because he says he's "cutting you loose" (what a weird phrase. My doc says that, too) doesn't mean he's seen the last of you. Be nice, but be persistant! If the pain management doctor doesn't want to do the MRI, or whatever other tests might be useful, keep asking. Ask your primary, your surgeon, anyone you can. The doctors go home at night and relax. You're the one hurting and living with it everyday. Don't give up! No one else is going to be the advocate you can be for yourself!

Please let us know what happens when you go to the PM. I hope you get some answers and some solutions!

Blessings,
Emily

 
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Old 09-08-2007, 06:36 PM   #3
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Re: Almost 5 mths post-op, feeling hopeless.

Sam I am sorry!! You story is so close to mine. I am 7 months from my second fusion surgery and still in agony. My surgeon has basically said he will not give me any more meds. Unfortunately, he did not feel it was necessary to refer me to a pm.

Fortunately, I have had tests run and know that I have problems that will probably require surgery.

I strongly recommend that you get another surgeons opinion before you submit yourself to nothing but pain meds. I have a thread entitled I did it on the pain management board and you might want to skim over it. Shoreline, Fabby and others said some words that really made me think. Most surgeon's do not like to admit that their surgery did not cure your pain and consider it a failure which is why they often will not perscribe past the 12 week period. It gave me another perspective.

Again, I am so sorry that we are living a similar story. It stinks to be suffering after this major surgery.

Take care and I am here for you.

 
Old 09-08-2007, 07:25 PM   #4
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Re: Almost 5 mths post-op, feeling hopeless.

[FONT="Times New Roman"][SIZE="3"][COLOR="Navy"]What an absolutely awful thing for that doctor to do to you. It just makes me sick the way some of these so-called experts treat their patients. Let me guess...he's a neurosurgeon? I'll get some flack for this, but every neuro I have seen (3) have been stuffed shirts with inflated ego's.

Don't give up. Find another doctor; perhaps some tests are needed to see if there is any other problems. Having 3 bad levels and only one surgically "fixed" could mean that one or both of the other levels are worse and your doctor knows that, I'm sure! He just didn't want to admit he should have probably done things differently.

I hope the new pm you are going to see is a straight arrow and maybe he can direct you to another doctor...one who is willing to put his patient before his $$$. Or you can locate one on your own............have you ever seen an orthopedic spine specialist? He's an ortho with extensive training on the spine issues and limits his practice to that area. The 2 I have seen were both really caring doctors, and always listened to what I had to say and answered all my questions without fail. I just have found them to be so much less arrogant than the neuro's, tho I know there have to be some wonderful neuro's out there.

Hang in there and don't sink into depression because you do have choices. I pray you will find someone very good, very soon.

Carol[/COLOR][/SIZE][/FONT]
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Old 09-08-2007, 08:25 PM   #5
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Re: Almost 5 mths post-op, feeling hopeless.

Everyone on this board is so great . Thanks so much for your replies. I was feeling really down earlier. I try not to let myself get down and luckily having a wonderful toddler to chase after helps me keep my spirits up most of the time. I also have a wonderful hubby and a terrific mother.

3 weeks ago my surgeon's (Yes, he is a NEUROsurgeon...lol) nurse told me that my doc would continue to write me scripts for my meds until I had my 1st appt with the PM doc. She told me that they would make the appt with the PM doc and then contact me and let me know who I was to see and when, well, I haven't heard back from her since. I guess it's no skin off by back considering she promised they'd give me scripts in the meantime. His nurse also told me that my surgeon did the surgery to relieve my leg and foot pain, which I find amusing considering I have never had leg and foot pain. My left leg and foot have been numb for the last 15 mths. All of my pain is in my back. I don't think his nurse knows what's going on. She told me during the same conversation that I need to be off the oxy, percocet, lyrica and flexeril b/c I'm almost 5 mths post-op and in the next sentence she said that I'm going to be in pain for a while b/c I had a huge surgery. She told me that the PM doc would teach me how to live with chronic pain without pain meds b/c I would always have chronic pain. Why didn't my surgeon let me know this b/4 he did the surgery? I'm getting the runaround and I'm sick of it. The sad thing is my surgeon came highly recommended from more than 1 person. I did my homework but I'm still in the same position so many of us are. I'm upset that my surgeon is cutting me loose before I'm healed from the surgery. Surgeons do just like to cut us open and send us on our way. I do plan to fight as long as it takes to find someone to take me seriously. My pain is not just in my head, it's very real.

 
Old 09-08-2007, 10:22 PM   #6
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Re: Almost 5 mths post-op, feeling hopeless.

Sorry to hear you are in so much pain. I will be a year post op on the 12th and my pain is worse then it was right after surgery. After hearing your story I realize I am very lucky with my surgeon. I went to him last week and he said next time just call. He told me that he will write me any prescriptions I need and sign anything I need. He said the reason is because he knows what kind of pain I am in and I need it. I had a double fusion, Lam and Disc. I told him I didn't like to call because the receptionist makes me feel like I am a drug seeker. He said who cares what she thinks and if I am in pain I need the meds. I told him I would like more therapy but was kicked out by the ins. co. I said if I had a different diagnosis that they may approve. He said anything I want. He changed it to muscle spasam and leg pain. I'll see if it works. He said he hopes the pain will eventually get better. I'm just glad he understands. Hope you feel better soon.

 
Old 09-09-2007, 12:25 AM   #7
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Re: Almost 5 mths post-op, feeling hopeless.

I too know what you are all going through...it's a rough time isn't it?

I am 31 years old and I'm 7 months post two level fusion (L4/5 L5/S1) and too am still having problems. Have been back to work since 12 weeks post surgical because my FMLA ran out and have been struggling ever since. I'm currently working reduced hours (20/week) and using my STD benefit for the remainder.

I feel like I've been jumping through flaming hoops trying to keep my job as of late. On Friday I was notified by my HR representative that the company would like me to see their occupational physician as apparently records from my neurosurgeon and pain management physician are not enough to validate my condition. I scheduled an appointment right away and basically he told me the best thing to do would be to go out on LTD which I fought tooth and nail as no one from the company has even had a discussion of the process and outcomes with me. He was amazed that I was functioning and making it to work with the amount of pain I have and the medication I'm taking. He also was very concerned with the amount of atrophy I have in my left leg compared to my right.

Isn't the funniest thing about this entire situation that the company's doctor is actually agreeing with the fact that I'm in rough shape. I just have had this feeling that the company thinks I'm out lunching with my girlfriends after I leave for the day...rather, I'm home laying down on ice packs, taking my medications because I can't function on them at work and going to therapy appointments.

My biggest concern is usually when you are on LTD it runs out after 2 years and you are also made to apply for SSDI. I checked our policy online tonight and it provides for payment until you are no longer considered disabled or you are retirment age. In addition, my neurosurgeon's OR Nurse stated that I'm too short out in recovery to consider disability at approximately 5 months post op when all these work issues began, which pretty much left me stuck without support from my neurosurgeon. Well after my appt with the occupational physican I called her to fill her in on what has been going on and she said to go ahead and take it...and that if I have to apply for SSDI that she will make certain that I am supported. Whew...what a relief!

Just trying to juggle the narcotics so I can at least function and be semi-conscious at work is really difficult. Most weekends I rarely get out of my PJ's because I need that down time for my body to recoup and be able to do the next week all over again.

I was told by my neurosurgeon that for a single level fusion the healing time frame is generally 12-18 months. They said because I had 2 seperate hemilamiectomy surgeries in the 12 weeks prior to my fusion, it will most likely be from 18-24 months before I start feeling a significant decrease in pain and start having more consistent pain free days...if ever.

I can totally relate with what you are all going through...we really had no choice to not have these surgeries...in my case I was told if I didn't have it my spine would collapse and I would suffer permanent nerve damage in the future. I have a considerable amount of atrophy in my left leg since the surgery yet have been keeping up with my PT regime.

Being such a young age and recently married I also want to TTC in the near future and know that the combined stress of my career and my health will not make for a healthy pregancy. I'm going to work with my OB at my yearly this week to try and come up with a plan with my PM doctor to help me get off the stuff that you cannot take while pregant and options for what I can take when needed for pain. Hopefully they will be collaborative and I'll be able to get alot of questions answered.

Tough decisions we've all had to make...I know I've said a million times before, this is my safe place...a place where I am understood and valued for what little information I can provide, however, it is these wonderful people that are able to bring such joy and comfort to my life on a daily basis.
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Old 09-09-2007, 08:37 AM   #8
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Re: Almost 5 mths post-op, feeling hopeless.

[QUOTE=BlueAtlas;3199037]Wow, Sam, I'm so sorry to hear this!

Will the PM doc do additional testing, maybe a new MRI, etc, to pinpoint the cause of your pain? Maybe he'll be able to send some new information to your doctor so he'll take you seriously. I sure hope so. You've been through all this and to still have such pain is just horrible. I hope the PM can help you!

Take it a step at a time, but don't give up! Just because he says he's "cutting you loose" (what a weird phrase. My doc says that, too) doesn't mean he's seen the last of you. Be nice, but be persistant! If the pain management doctor doesn't want to do the MRI, or whatever other tests might be useful, keep asking. Ask your primary, your surgeon, anyone you can. The doctors go home at night and relax. You're the one hurting and living with it everyday. Don't give up! No one else is going to be the advocate you can be for yourself!

Please let us know what happens when you go to the PM. I hope you get some answers and some solutions!

Blessings,
Emily[/QUOTE]

Emily,

I'm not sure what the PM doctor will do. I don't understand why my surgeon is cutting me loose considering I had 3 herniated discs prior to surgery and he only fixed 1 of the 3. Why isn't he thinking my pain may be coming from the other 2 discs that are still herniated? The one thing I have learned from speaking with all of the great people on this board is to be persistent and not to take no for an answer. I'll let you know what happens.

Shannon

 
Old 09-09-2007, 08:45 AM   #9
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Re: Almost 5 mths post-op, feeling hopeless.

Dr P,

I read your thread on the PM board. Wow. I am so sad for you. Why is your surgeon being so conservative with the pain meds if he knows why you're still in so much pain? It all makes me so angry and I'm not a person to easily get angry. I think we are all sick of being treated like drug seekers. My doctor has cut my meds too so most of the time I'm in severe pain. Pain makes people very angry and not themselves. I'm sure your hubby and children understand that. I am praying that your GP will help you out. I remember when my back problems started we had moved to a new city so I had to find a new GP. When I went to her for the 1st time she ordered an MRI and gave me 30 lortabs (5/500), prescription strength Aleve and she had me start PT. After she received my MRI results showing I had 3 herniated discs she gave me a huge supply of Lortabs, so if worse comes to worse I think she'll help me out. Please let me know how your GP appt goes. I will keep you in my prayers .

 
Old 09-09-2007, 08:48 AM   #10
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Re: Almost 5 mths post-op, feeling hopeless.

Sam,
I am so sorry, you are too young to loose your hope; but I know how easy to do so when your life changes so much and when you leave in pain. Been there done that and still there :-)

When I had my pre-op discogram, my surgeon told me that he will do 2 levels for now even though my 2 upper levels is 50/50
Guess what? Now i need to do them too! So my next surgery will most likely be 4 levels. I am so mad! I feel like if you already did the surgery, who cares if you do 2 levels or 4 same time? Why now, 18 month later i have to get ready for another one and re-do anyway what was done + add 2 levels on a top? So I know what you are going through...

My daughter started to have back problems since her first pregnancy to the point that she never thought she will want to be pregnant again. Well, her baby is 2,5 years old and she is talkinga about having another baby. So don't give up yet - you are still very young and things may be better for you.

(((( ))))

 
Old 09-09-2007, 09:22 AM   #11
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Re: Almost 5 mths post-op, feeling hopeless.

Thank you Sam. I pray that you find the courage now to move forward and make sure you have a pain management plan ready to roll if your surgeon cuts you off. Keep some meds stashed for back up until you can get your new plan in effect. It sounds terrible and looks terrible in black and white but you have to look out for yourself and make sure you are covered.

We all go into surgery thinking positive, like we should, we want nothing more than to be well. Unfortunately sometimes things don't go perfectly. We all heal at different rates and our bodies were in different states prior to surgery.

But I think if you are having severe pain at 5 months and your surgeon is even hinting of cutting you off you have to protect yourself.

I telling you this not to bring you down or sound negative but I would hate for anyone to have deal with what I have been thru the past week.

I think having surgery and dealing with the post op was easier than what I am going thru now. At least, I had meds.

God Bless you and I am praying that you find some answers soon.

 
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